FIBROMYALGIA: Hermes123. As a new comer with... - Pain Concern

Pain Concern

30,317 members10,006 posts

FIBROMYALGIA

Hermes123
Hermes123

Hermes123.

As a new comer with this decease and just being told I was suffering with it, plus my one and other pain conditions! The consultant never bother to tell me what it entailed, since recently reading the story of the Desert Island Disc presenter and seeing the video, it makes me wonder how people cope, I had never heard of it before, I would like to hear the views of fellow sufferers, how they get though day by day are there groups for fellow sufferers. thanks to all. Hermes.

14 Replies
oldestnewest

hi health unlocked has a page dedicated to fibromyalgia along with this page it may be worth you joining that group also.

Hermes123
Hermes123 in reply to kenster1

Hermes123.

Kenster, thank you for pointing that out to me, after I had posted my message I did see a couple of references about fibromyalgia, concentration is not the easiest of things with this condition. Thanks again will have a look. Hermes.

Fibromyalgia is a catch all name given to a list of symptoms. Massage therapists on the complementary medicine have treating it for years. Medical consultants have had no great success with it because medical consultants often have no idea how the brain and muscles work.

Over contracted muscles need to be lengthened out. Lengthening out an over contracted muscle can be a painful process.

Hidden
Hidden in reply to johnsmith

Fibromyalgia is not about muscles, it is primarily a nerve condition, I think you have confused this with something less serious.

Hermes123
Hermes123 in reply to Hidden

Hermes123

Hi TriciaW5, I whole heartily agree with you! As a fellow sufferer of multiple pain conditions myself over at least passed fifty years, mainly Arthritis, Osteoarthritis, Fibromyalgia and now Gout in left wrist and arm bone and elbow joint. Besides too numerous other pain linked conditions pass years ago. Spending ages on this course that course, same having to experiment with one form or the other medication.

Coping with all kinds of density of mild to really chronic pain, a lot of trying to blank it out using my mind in other directions, Now not only exhausted in body mind too is feeling to exhausted to cope as well. I feel really done in. Wish you well. Hermes.

johnsmith
johnsmith in reply to Hidden

Actually i have not. Dig out your medical notes. Look at what they did to diagnose Fibromyalgia. Ask the question what tests they did on the nerves? Ask the question what work did they do on muscles?

There is research out which suggests that what neurologists believed about nerves and how nerves function is wrong. The work of Thomas Myers on how the body connects together is very different than what neurologist believes in how the body connects together. Neurologists have a list of reasons for Fibromyalgia and no cure.

Alexander Teachers, chiropractors, sports therapists have shown that there can be improvement for Fibromyalgia conditions in contrast to a neurologists treatment.

Diagnoses are just that a diagnosis from a list of symptoms. The interesting thing is when you look at the cause.

You need to investigate. You need to cross reference. All of which is not easy when there are a lot of skills which need developing.

Hidden
Hidden in reply to johnsmith

John, I already have the skills thank you - degrees in biology, psychology and applied statistics. And I have read the research reports on the results of MRI testing.

Hermes123
Hermes123 in reply to Hidden

Hermes123

Hi TriciaW5, I not a person that upset's other? Nor do I like to be rude, but I do take exception on the various Health Unlock blogs where John Smith's comments come across as if he is the only one that knows, what he's talking about and other's have not a clue of the importance of their own knowledge gained over considerable number of year's.

John, I think needs to take a step back twice before passing a comment and take on board, other's do have a right to pass comment without being dragged down by Mr Perfection. Hermes.

johnsmith
johnsmith in reply to Hermes123

I like the comment "Mr Perfection". I am the only one that knows, what I am talking about because there is the inability to share particular types of knowledge. All one can do is try to point a particular direction and hope that someone can grasp what you are trying to say.

The written word does not carry voice tone, voice speed or body language. The written word does not have the ability to point at something and show what you are referring to.

If you feel that you are being dragged down by comments meant to expand to thought I cannot help that. I am writing for the whole community with the hope that someone will find what I say helpful.

I call a spade a spade and I have seen too many people in agony because they could not get the information they needed.

Hermes123
Hermes123 in reply to johnsmith

Hermes123.

John Smith,

There you go again? You are the only one that knows what he's talking about, when you received your degrees, I believe your mortar board was stuck to your head with a load of cement and it set there ever since you have carried round a great weight around on your head. If I had one pence for every paper written, announced with full confidence of a new break though in cure to the pain pathways the mending of the electrical stimulation of the spinal cord, once announce made found there way to the rubbish bin, I should be a Multi Millionaire, I have been though the mill for just over fifty years both Private NHS also the wired and wonderful. operations were not available for back problems in 1969. I had a 13. year wait then the risk factor was 78%, when eventually I receive my first op on my lower back, I spent 6.weeks on the ward and another six weeks daily in the physiotherapy department, ever since break down after break down. this was a very fit physical young man.

A boxer- long distant cross country runner 21. miles a weight lifter just to keep fit a road racing cyclist, just a few of my keep fit regimes, at the same time off two and a half years active service, you think we knew nothing about looking after our bodies. dream on sunny John. I'm out off here. Hermes123.

johnsmith
johnsmith in reply to Hermes123

Thank you for the reply. You are right about the weight I carry around with me. I had to take on the NHS when everyone was saying how wonderful they were. I had to find out by experience that what I once believed was true was not.

richardharriswrites.com/

Gives voice to some of the things you have discovered.

april.org.uk

Gives another voice.

You have the experience please use it to try and bring about change. You one of the many who have been hidden from view by medical confidentiality. I know some things and not others. Each person is an individual who has to try and find what works for them when things have gone wrong.

I am not the best communicator. I do not have the skills of a politician. If you think something I said is wrong, then point out the error in my reasoning. Everyone in the community will benefit from it. Especially me. It means that I have misunderstood what I thought I was saying, put the wrong word in a sentence or thinking about a different thing than what the reader is.

Discussion moves things forward as there are just too many things to be able to keep track of.

The NHS mandarins like nothing better than injured patients squabbling among themselves.

johnsmith
johnsmith in reply to Hidden

Degrees in biology, psychology and applied statistics are useful but not the skills I am talking about.

There is much discussion going on about the false results of psychology. If you read the science journals you are probably aware of these discussions. Biology reports on things that can be measured. Some of the skills I am talking about cannot be measured by biologists or psychologists. They are internal skills of self observation. They are the internal skills of how do I actually do something effectively. There are no written papers on this in the University written reports. There is much written in the Buddhist monasteries on the issue.

Applied statistics does not give complete answers. It does not tell you where you are on the population curve of results. it does not tell with Confounding factors very well. Fo example. Pain killers on their own can go up to a particular dose. Lots of statistics on this. The doctor prescribes a further tablet for a persons anxiety. The patient dies horrible death because the anxiety medication has increased the effectiveness of the pain killer.

A MS patient has a pain in the face. The doctor prescribes a strong pain killer. The MS patient no longer can move their legs as a result of the pain killer medication.

There are new theories on how nerves function which show that the model taught in a Biology degree is wrong. The new model matches the observations of body movement I have observed. The old model leaves something to be desired.

The work of Thomas myers and Ida Rolf would have not been in your biology degree. Neither would the work of FM Alexander. I have been to physiotherapy conferences where there has been discussions on the issues of measurement and the inability to measure what is needed.

RobbieT
RobbieT in reply to johnsmith

Bless!!! All this back & foward 'discussion" (?) took my mind off my chronic pain & tramal withdrawals (plus other crappy ailments which would no doubt bore you lovely contributors silly)... for at least a millisecond. Now back to crawling toward the next moment of my (overrated) twilight years. Positive vibes to all.

Hermes123
Hermes123 in reply to RobbieT

Hermes123,

Hi Robbie, sorry for the late reply which ended up with time in hospital whilst on holiday, not me this time but the wife, suffering terrible pain in her leg muscle, CT. scan revealed what they call baker's cyst, when the knee cap gives away and fluid goes to the leg muscle causing a massive swelling and awful pain, unable to walk or bend the leg. easing up a little after three days rest, talk about worn out. If its not one thing its another. What can you do? just smile even if it is with a wince. Hermes.

You may also like...